Safe Harbor: A Podcast for Parents of Children with Disabilities

In this episode your host, Theresa Bartolotta, is excited to announce that she is resuming the podcast! She shares an update on life and the reasons behind the long gap between episodes. Theresa reviews podcast statistics and how successful the previous episodes have been with over 2500 listens in 34 countries! The core principles behind the podcast remain the same:  to share experiences about parenting children with disabilities, sharing our stories (not comparing), and valuing every life. This podcast is for parents who are walking this challenging path. We parents did not choose to have our children be born with disabilities, but we are embracing this life in all its forms, and we celebrate the beauty and wonder we experience.  In future episodes you'll hear stories that will challenge and inspire you. We'll talk about tips for all phases of life as well as strategies for self-care and healing.

Come share your thoughts in the Safe Harbor Facebook group. And find me on:

Instagram: @theresabartolotta
Facebook: Safe Harbor: A Podcast for Parents of Children with Special Needs
Website: https://www.theresabartolotta.com/

Please rate and review - it helps others find us. And thank you for listening! I know your time is precious and I send my gratitude to you.

In this solo episode I talk about stages of parenting a child with a disability. First there's the initial stage, when we deal with a diagnosis and setting up a treatment program and a community of care.  Then there's the middle stage, when we are busy with educational programs, managing a medical team, IEPs, therapy, and advocacy. That's a really busy time. Then there's the third stage, as we and our children age. In this third stage we are faced with managing details around guardianship, wills, trusts, and future planning for our children. There's also the feelings that occur during this stage as we face our mortality and the reality that our children may outlive us.  Many of us put off dealing with these tasks as they feel overwhelming and bring us concern and sadness. Procrastination actually is harmful to us, both to our bodies and to our minds. I talk about strategies to use to move past procrastination, and how freeing it feels to have these decisions made. You can always make adjustments as life changes.

Here's a link to a great resource on future planning: https://thearc.org/our-initiatives/future-planning/
I will take some time off towards the end of the year so there may only be a could more episodes for 2022.  Be sure to subscribe so you don't miss an episode! Happy Thanksgiving to everyone celebrating. 

Come share your thoughts in the Safe Harbor Facebook group. And find me on:

Instagram: @theresabartolotta
Facebook: Safe Harbor: A Podcast for Parents of Children with Special Needs
Website: https://www.theresabartolotta.com/

Please rate and review - it helps others find us. And thank you for listening! I know your time is precious and I send my gratitude to you.

In this episode I speak with Abby Burle, founder of Love Your Story, an organization dedicated  to create places of belonging for families impacted by disabilities.  This project started after Abby and her husband Ryan traveled around the country seeking medical care for their triplets. They realized the financial impact of disability on family, and that many families spend more than 22% of their annual income on expenses related to the disability.  In the episode, Abby talks about her journey as a mom to children with disabilities, and how she advocated to start Love Your Story. She shares the story of their first project, which was to purchase a home in Gainesville, Georgia to provide physical and financial rest for families traveling to the area for medical treatment or intensive therapies. 

Abby is passionate about inclusion and changing the way we talk about disability and understanding those who live with disability in their families. You will be inspired by her drive and how she creates community.  Enjoy!!

You can follow Abby at:
Instagram @loveyourstory.us
Website: https://loveyourstory.us

Come share your thoughts in the Safe Harbor Facebook group. And find me on:

Instagram: @theresabartolotta
Facebook: Safe Harbor: A Podcast for Parents of Children with Special Needs
Website: https://www.theresabartolotta.com/

Please rate and review - it helps others find us. And thank you for listening! I know your time is precious and I send my gratitude to you.

In this episode I interview the fun and inspiring Laura Hernandez of Mama Systems. Laura is mom to a large family and several of her children have disabilities.  Listen to Laura explain how she turned her challenging life into one of peace and organization using systems. Laura is an example of someone who is using their talents and their gifts to turn the world right - to make something positive. This is such an important part of our mission here at Safe Harbor - to turn challenges into opportunities and make the world better. Laura's goal is to "help mamas have more peace in their homes."

I am sure you'll find her story inspirational. Check out her website mamasystems.net where you can download a free self-care guide. And we all need more self-care don't we!

Follow Laura on Instagram @mamasystems

Come share your thoughts in the Safe Harbor Facebook group. And find me on:

Instagram: @theresabartolotta
Facebook: Safe Harbor: A Podcast for Parents of Children with Special Needs
Website: https://www.theresabartolotta.com/

Please rate and review - it helps others find us. And thank you for listening! I know your time is precious and I send my gratitude to you.

I really enjoyed interviewing Sam and Sarah Ahlstrom, parents to a young girl with Rett syndrome, and co-hosts of the pRETTy happy podcast, a show dedicated to "Bringing families and friends together from the Rett syndrome community to discuss life, research, and just have fun."  I am excited to post this interview during Rett Syndrome Awareness Month, but the episode is not just for people who love someone with Rett syndrome. Sarah and Sam are an example of folks who are taking a challenging experience and working to make things better in this world. Their story will inspire others to make a difference and share positivity.

In addition to sharing information on their podcast, they have a website where they share information on adapting toys for children with disabilities. They sell some affordable adapted toys, as well as switches they make, along with information on how to adapt toys on your own. This is a gamechanger for children who have difficulty accessing toys in the traditional way.

You can find the pRETTy happy podcast wherever you listen to podcasts. Here's a link to their site on Anchor: https://anchor.fm/prettyhappypod
You can find adapted toy information on their website: pRETTy happy. | A Rett Syndrome Community

Come share your thoughts in the Safe Harbor Facebook group. And find me on:

Instagram: @theresabartolotta
Facebook: Safe Harbor: A Podcast for Parents of Children with Special Needs
Website: https://www.theresabartolotta.com/

Please rate and review - it helps others find us. And thank you for listening! I know your time is precious and I send my gratitude to you.

In this solo episode, I talk about Awareness Months, or Days, when a particular disorder is acknowledged. October is Rett Syndrome Awareness Month, and as a mom of a young woman with Rett syndrome I support many activities this month to raise awareness about Rett.  Many other disorders are acknowledged in a similar way, with specially designated months of days. There can be two sides to how parents of children with disabilities handle these months/days. First, with pride and enthusiasm, sharing stories and facts to educate others. Many parents host fundraisers to support research efforts. In contrast, there can be a deep feeling of what has been lost due to the disorder. I find myself feeling Bittersweet about this - holding two contrasting feelings simultaneously.  We all feel heartache at times and it's important to share the stories of loss and longing to help lift us all collectively.  In this episode I talk about the need to share openly and not apologize for our sadness.

I reference a terrific book, "Bittersweet" by Susan Cain. Here's an Amazon affiliate link if you'd like to learn more about this topic: https://amzn.to/3T9y3ER

Come share your thoughts in the Safe Harbor Facebook group. And find me on:

Instagram: @theresabartolotta
Facebook: Safe Harbor: A Podcast for Parents of Children with Special Needs
Website: https://www.theresabartolotta.com/

Please rate and review - it helps others find us. And thank you for listening! I know your time is precious and I send my gratitude to you.

In this episode I interview Becky Tilley , who describes herself as "a rare mama living with Koolen-de vries syndrome." Becky has  three beautiful children and her two youngest also have KDVS. She is a very passionate writer and rare disease advocate.  In her open and beautiful story, Becky shares about her own life, growing up as someone with different learning abilities who struggled in school. As a mother trying to understand her second son's developmental challenges, Becky learned that she, and her son, shared the genetic disorder KDVS. Becky's next child is also a KDVS baby. Becky shares her challenges and successes and how she has turned this story into one of love and opportunity. 

Becky writes at her WordPress blog site "Koolen Mama", and hosts an international rare disease support group on Facebook,  "Mamas Heart". If that wasn't enough, she also hosts a KDVS Support Group for families living in the United Kingdom. She has written several articles and blogs published by a number of rare disease charities and magazines.

This interview is about acceptance and love and celebrating differences. Becky's words, "What starts as the breaking of you can be the making of you" truly resonated with me. Please follow Becky on Instagram @koolen.mama 

Come share your thoughts on this episode where you find me:

Facebook: Safe Harbor Podcast
Instagram: @theresabartolotta
Email: [email protected]
Webiste: theresabartolotta.com
Do you have suggestions for guests or books to review? Please share! 

Please rate and review the podcast- it helps others find us.

Stay well and thanks for listening - I know your time is precious so I send my gratitude to you!

Come share your thoughts in the Safe Harbor Facebook group. And find me on:

Instagram: @theresabartolotta
Facebook: Safe Harbor: A Podcast for Parents of Children with Special Needs
Website: https://www.theresabartolotta.com/

Please rate and review - it helps others find us. And thank you for listening! I know your time is precious and I send my gratitude to you.

In this solo episode I talk about the cycles of grief and hope, and how the feeling of hope, and a gratitude practice, can help us get through the tough times. Parenting a child with a disability can be a rollercoaster - one day you're up, the world looks beautiful, and the next day something happens with your child, and you're down in the dumps yet again.  It's a stressful, exhausting process that's harmful t our bodies and our minds. So how can we balance this out to protect ourselves and enjoy the life we are living? 

Let's talk about hope - a settling in of a feeling of accepting what is and believing that there is a light on the horizon - that it won’t be like this forever.

I found this quote that really resonated with me: “Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.” – Thich Nhat Hanh, who was a Vietnamese Buddhist monk and peace activist.

I provide some strategies to live a life of hope. Prayer:  whatever your belief system, prayer moves our focus up and away from the earthly details to give us a wider perspective and helps us not feel alone but to feel supported. For those who pray - giving up your burden - even hypothetically - to a higher power - can be uplifting and freeing.

Physical exercise: walking, moving your body, focusing on the physical can lighten your mood and fill you with positive endorphins. For me - yoga does wonders. Focusing on breath work, centering my soul, fills me with positivity. 

A gratitude practice: a daily ritual of noting things to be grateful for. How do you begin? Some people have gratitude journals where they write down a number of things at the beginning or end of the day. If you have a morning ritual, or evening ritual, can you make it part of that/ and pick a number - 3 things to be grateful for? 1? 5? It's up to you. Research shows that this is a beneficial practice for our minds as well as our bodies.

Laura Will, who I interviewed on Episode 13, https://www.buzzsprout.com/1909282/11264891 wrote a blog on this topic - Cultivating Flexible Hope: A look at the emotional cycles in chronic illness. Find it here: https://knowrare.com/blog-v2/cultivating-flexible-hope

Find me:
instagram: @theresabartolotta
facebook: Safe Harborhttps://www.facebook.com/groups/345289967597545
website: https://www.theresabartolotta.com/

Thanks for listening - your time is precious, so I extend my gratitude to you.

Come share your thoughts in the Safe Harbor Facebook group. And find me on:

Instagram: @theresabartolotta
Facebook: Safe Harbor: A Podcast for Parents of Children with Special Needs
Website: https://www.theresabartolotta.com/

Please rate and review - it helps others find us. And thank you for listening! I know your time is precious and I send my gratitude to you.

Today my guest is a dear friend and colleague - Leslie Greenfield. Leslie has lived a life of volunteerism while raising her daughter Heather, who has Rett syndrome. I think you will find inspiration from this conversation. In her life, Leslie has worked tirelessly to fill needs she identifies.
Leslie currently serves as the New Jersey Regional Representative for the International Rett Syndrome Foundation. In this role she supports new families as they face this terrifying diagnosis and learn to navigate a new way of life. Most importantly Leslie is wife to Mike and they have 2 daughters, Holly, and Heather, who has Rett syndrome. In this episode Leslie talks about their journey to find out what was wrong with Heather when she began to regress at about 9 months of age. You'll hear about their search for answers as they struggled with persistent seizures, loss of skills, and finally learned the right diagnosis. Once learning Heather had Rett syndrome, Leslie almost immediately jumped into action. Heather was 10 years old then and she and Mike have been advocating, educating and spreading awareness of Rett syndrome ever since.  Together with some passionate families Leslie and Mike founded the New Jersey Rett Syndrome Association. They have hosted several local seminars, family gatherings and fund-raising events. In 2011 NJRSA partnered with Monmouth University to create the Program for Rett Research and Support for Rett - they provide education and support and communication therapy for individuals with complex communication disorders. Through their work they are teaching graduate students about working with individuals who are nonspeaking and how to help them access augmentative communication.

I hope you enjoy my conversation with Leslie. There are  so many wonderful takeaways - resilience, strength, ups and downs, and perseverance. She started something from nothing and it’s a model for success. You can reach Leslie through email [email protected] and njrsa.org
You can find me on instagram at theresabartolotta. And email me at [email protected] to get on the mailing list to hear about updates. And visit my website for book recommendations and to listen to prior podcast episodes: https://www.theresabartolotta.com/

Please rate and review the podcast- it helps others find us.
Stay well and thanks for listening - I know your time is precious so I send my gratitude to you!

Come share your thoughts in the Safe Harbor Facebook group. And find me on:

Instagram: @theresabartolotta
Facebook: Safe Harbor: A Podcast for Parents of Children with Special Needs
Website: https://www.theresabartolotta.com/

Please rate and review - it helps others find us. And thank you for listening! I know your time is precious and I send my gratitude to you.

I am so excited to welcome Laura Will to the podcast. In the last episode I interviewed the co-founders of Know Rare - Nina and Jack Wachsman, and today I have an interview with Laura Will, who writes blogs about the parental experience for knowrare.com as well as leading their patient advocate team.

This is a very special interview - Laura, a trained nurse practitioner, talks about her personal experience as mom to her 2-year-old son Alden who has a rare disease. She is a gifted writer and a poet and you’re in for a treat - she shares her beautiful poetry that will move you - I assure you. She also does volunteer work and has started a local support group in the Cape Cod Massachusetts area for parents of children with medical complexity or disability.

Laura will inspire you with her actions to support families along with her moving words. Here's how to find her:

Laura’s website: adragonmomswords.com

And also look for Laura’s posts on the Know Rare blog - knowrare.com/blog

You can connect with me by following me on:
  Instragram: @theresabartolotta
  Facebook:  Safe Harbor Podcast group
  Website:  theresabartolotta.com where you can find my podcast episodes, books I recommend, and more to come!
 And email me at [email protected] to get on my mailing list.

Please rate and review the podcast- it helps others find us.

Come share your thoughts in the Safe Harbor Facebook group. And find me on:

Instagram: @theresabartolotta
Facebook: Safe Harbor: A Podcast for Parents of Children with Special Needs
Website: https://www.theresabartolotta.com/

Please rate and review - it helps others find us. And thank you for listening! I know your time is precious and I send my gratitude to you.